Monday, October 27, 2008

Rain in Boston and other seemingly random, but actually not, happenings

Well, hello b-log world! Have you missed me, thought about me, wondered if I'd died yet? I have not, in fact, kicked the bucket. I have, however, been too busy with school and work and face tumors and more school and have not had the time or the concentration to update the b-log. That being said, I apologize to everyone who has been wondering what happened to me. I certainly did not mean to worry anyone, and although the past almost three months have been an absurd combination of positives and negatives in my life, I have generally been doing splendidly.

Okay, so, the last anyone heard from me, I had just returned to Boston from my vacation in Canada. I was on the radio for a Jimmy Fund fundraiser, and I was getting mentally prepped for the upcoming semester. I was also battling the sickness. You know, sore throat, stuffy nose, headaches, wracking cough. Same old stuff. The school year began, and I was thrown headlong into my senior year of college. I began this year a completely different person from the me who had returned to Boston last year after my semester off. This year, yes, I was still getting some chemo, but I was so much stronger, literally and figuratively. So good, grand, I was ready to go. Unfortunately, I was also still contending with the Sickness. I was actually a sick mess. My doctor put me on antibiotics, and those cleared up my chest congestion and cough, but then my sinuses started giving me grief. So my doctor put me on different antibiotics, and wouldn't you know, my sinuses got worse. And worse. And then pretty much the entire right side of my face started hurting like woah. On September 10, my doctor finally said I should probably get my head scanned. I scheduled a CT scan for the 13th. He called me on the 15th, said there was something a little odd but not worrisome in my scans, and he wanted me to meet with an ear-nose-throat doctor. Okay... So I call the ENT for an appointment, which was scheduled for two weeks later, September 23. In the meantime, I was in an extraordinary amount of pain. Basically, I started shutting down. I could barely sleep; my appetite disappeared; I gave up on being social or even trying; and I was popping Tylenol like it was nobody's business. I was still working at the gym and going to class, but that was just about it. So, okay, September 23 rolls around, and I meet with the ENT. She sticks a lighted camera up my nose and into my face and confirms what the CT scan suggested: there was a fairly large mass in the pharyngeal area of my face (behind my nose ish). The really fun part is that it was sort of coated in mucus (mmm), which is what I had been curiously hacking up for a few weeks. Her suggestion: a biopsy. Woah now. She floated the word lymphoma... She also said it might be some sort of infection or fungus. I hoped it was a fungus.

After that, I really turned off. I had no idea what was wrong with me, and all sorts of worst case scenarios kept running through my head. I finally pretty much stopped thinking about it because I knew there was nothing I could do until after the biopsy when we knew what exactly my face tumor was. On September 30, two days before my 22 birthday, I went in to the hospital for a biopsy of the tumor in my face. I had to wear a hospital gown and blue non-slip socks. I kept the socks. The best part was they knocked me out for the procedure. The anesthesiologist came over with his tray full of various vials of drugs and happy things and was like, So, you're a college student, I assume you drink? me: Yeah, a bit... him: Okay, well, think of this as drinking three of four beers all at once. I was like, oh please. Felt nothing... Felt nothing... And then they started wheeling me off to the operating room, and it hit me. I looked around and everything was sort of shifting and wavy. And then I blacked out. Good times with narcotics. Anyway I'll move on. The biopsy happened, went well I guess, and I went home with bloody snot and a prescription for vicodin.

I didn't go to class that week, and I spent my birthday slightly drugged and sleeping. I canceled the bar-hop I had planned, and some friends came over to my apartment instead with cake and laughter, and we watched the vice-presidential debate. My college experience certainly hasn't been like anyone else's. But we all already knew that. One week later, they scheduled me to meet with the ENT again to go over the biopsy results. I showed up, and wouldn't you know, the results weren't in yet. She once again suggested lymphoma, a little more definitively this time. She also said they were sure it wasn't a fungus. Wasted appointment, although she did prescribe me Tylenol with codeine because the vicodin hadn't been working for my face. Oh, p.s., at this point too, the right half of my face had gone numb, and I couldn't open my jaw much anymore. The ENT doc did explain that though: I guess the tumor in my face was growing through a crack in my skull up towards my brain and was pushing on the nerves that controlled my face. Hooray!

One more week, and I was scheduled for a PET scan, which, I think, scans for lymphoma-type oddities. Finally, on October 15, more than a month after the first CT scan showed the mass in my face, my doctor had an answer for me. It wasn't leukemia, which they had been worried about. It wasn't quite lymphoma either. It was something called Lymphoproliferative Disease, LPD. Apparently, it isn't that uncommon in transplant patients and people with rheumatoid arthritis, but I was the first ALL patient he had seen with it. Basically, it is a proliferation of B-cells in the form of a tumor. The Epstein-Barr virus is related as well. I think the tumor was an inflammatory reaction to the presence of the virus, but I am not quite sure how that works. Something about immunosuppression as well.

In short: it isn't cancer, and it is treatable. The treatment consists of a weekly infusion of an antibody called rituxan, which is commonly used to treat lymphoma, although it isn't chemo. So for the past three weeks I have been getting this infusion. This coming Monday will be my last one. My doctor hopes/thinks that it will only take four infusions to make the tumor go away completely and for good. I hope he's right. I am pretty sure the treatments have been working. I have started functioning again. The feeling is almost completely back in my face (yeah!), and the pain is substantially less than it was. Actually, last night was the first night in a long time that I've slept through the night without taking any of the painkillers. (Oh yeah, my doctor eventually prescribed me oxycodone because the tylenol + codeine wasn't really doing anything either, although it kind of worked when I combined it with the vicodin...) The other thing is that because of all this, my doc decided to stop entirely the rest of my leukemia chemotherapy. So I am technically done with chemo!! Funny how that works out.

This is a ridiculously long post, and maybe you've read the whole thing? A whole lot of other stuff has happened over the past few months, not the least of which is I sued my landlord, went to court, etc. I also applied and was accepted to BU's Washington DC journalism internship program for next spring. Praying all goes well, I will be photographing in DC next semester! I also had my brand new computer stolen a few days ago. I know it sounds like my life has kind of been the pits this year, and I'm not saying it has been amazing. Strangely though, I really am doing pretty well. I am so glad to be in Boston with all my friends who have helped me immensely through this. I love all of my classes, even if I haven't been doing all the work quite on time for them... And I have so much to look forward to. Also, I am just happy to be me, to be here, right now. Face tumor be damned, I am still alive, and I am still doing what I do. I hope everyone out there is keeping on as well, and thanks for reading if you have and thank you to everyone who has expressed their concern as to how I am. I am good. Peace.

1 comment:

Caroline-1. I am still reading your (b)log2. It's good to know that you're still going3. It's funny, I look at all of the stuff in my life, and then I read this blog and it all seems to fade blissfully into obscurity

Thank you for providing this example that no matter how bad life gets, it's worth living and that someone better than me has it so much worse and yet handles it so well.

About Me

On Friday, December 8, 2006, I was diagnosed with leukemia. Specifically, Acute Lymphocytic Leukemia. That's cancer of the blood for those of you who weren't sure. So, this is my blog about the next six months of my life. They're going to be hard; I'm going to be lonely. The goal is to make it out okay. Among various other goals I'll probably be writing about later. Comments, support, laughter, all, feel free to share. Pax.
*addendum:
This blog has lasted a whole lot longer than 6 months. Now that I am finished with treatment, I still cannot give it up. But now it focuses on my thoughts about (mostly) my life and my various experiences with and related to cancer. Comments, support, laughter... All still welcome. Thank you for reading!! :)